Judy M. Posted September 16, 2017 Share Posted September 16, 2017 Have been trying to update for a few weeks now. Had a lot of trouble signing in. All about forgeting a period in my name. But in now, so all good. Finished treatment and received my C.T. Scan and results. The 3 lung tumors have shrunk and still show no Mets anywhere. Very happy about that. But confused somewhat. For some reason I thought since I had S.B.R.T. on all 3 tumors they'd simply be gone-zapped away. According to my med. Oncologist not so. He says he's seen what looked like nodules 18 months out from S.B.R.T. and that I'll always have scar tissue there. He doesn't seem at all worried and plans to do P.E.T. Scan early December. Can any others who have had S.B.R.T. tell me what I should expect to see after this on my lung scans? Also, am 6 weeks out from my last Cisplatin/Alimta chemo treatment yet food still doesn't taste normal and at times goes back to tasting bitter like it did right after chemo. Anyone else have this side effect last this long? Any ideas on how long I can expect it to last? Good to finally be back with you guys. I'm sure Tom will have some S.B.R.T. Scan infor for me. Judy M. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 17, 2017 Share Posted September 17, 2017 Welcome back Judy! Some of us were worried (me at least). I forgot to tell you about scar tissue after SBRT. I still have it. It showed up on my last scan and therefore think you'll have scar tissue also. Let us hope it stays scar tissue! Mine did. Taste problems after chemotherapy, yes I had that. For a long time I couldn't have citrus fruits, raisins, or salad dressing. They all tasted very bitter. So did pasta sauce come to think of it. How long did that problem stay with me? I can't recall exactly but I had a total of 18 infusions in the course of 3 years. I think longer than 6 months but shorter than a year. It will go away so at least I hope it is soon. The PET scan in December will be a big tell. I hope you are "surfing smooth NED" by Christmas. Go on vacation. You earned it. Stay the course. Tom LexieCat and Judy M. 2 Quote Link to comment Share on other sites More sharing options...
Judy M. Posted September 17, 2017 Author Share Posted September 17, 2017 Thank you,Tom! Feel much better now that I've heard from you. Pasta sauce is one of the things I still can't enjoy also. Or tomato soup. And I loved both previously. Looking forward to getting my old taste buds back. Had no idea that side effect could last so long. Plus, though I didn't lose nearly all of my hair I lost about 1/3 of it and when the food nastiness comes back more hair loss accompanies it. But this usually only comes around for one day every five or six days now. Thanks so much for responding. Judy M. LexieCat and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Linda DaPra Posted September 20, 2017 Share Posted September 20, 2017 What is S.B.R.T Quote Link to comment Share on other sites More sharing options...
Steff Posted September 20, 2017 Share Posted September 20, 2017 Linda, SBRT - It's a mega dose of radiation. It is usually given in 1-5 doses instead of several small doses like typical radiation treatment. I hear it can be much more effective and is not available for all "tumors". My mom had low dose radiation, so that's about all I know about it. I'm sure that Tom and Judy can give you better information. Quote Link to comment Share on other sites More sharing options...
Judy M. Posted September 20, 2017 Author Share Posted September 20, 2017 Linda explained it well. In my case, I had 3 tumors, one in my left lung and two in my right. All three were treated one after another with the megadoses of radiation. In S.B.R.T. they hit the tumors with radiation from different directions. Have had standard radiation also for another type of cancer and the difference you notice as the patient is that S.B.R.T. takes longer per session and is accomplished in a lot fewer days. Because I had 3 tumors each treatment lasted 60 to 90 minutes and I had a total of 5 treatments over a two and a half week period. Usually S.B.R.T. is finished in 10 Days or less because they treat every day or every other day. Mine was different I think because I had 3 tumors treated and they were concerned about toxicity. Tom will probably chime in here and give a better explanation at some point. I did a blog post on here where I explained my situation and more about the S.B.R.T. I received. As I understand it this type of radiation had been used for brain Mets for some time. Then they began to use it for stage 1 patients who only had 1 tumor and were unable to have surgery to remove it because of other health problems. Recently it's been used for patients whose tumors are what they call oligometastatic ( I think I spelled that right) meaning limited to 2-5 usually and not spread to other areas. Also the tumors need to be fairly small. Mine were all 3 centimeters or less. The dose of radiation to the tumor itself is higher, but it's pinpointed to the tumor itself so is covering a smaller area. You can google S.B.R.T. for oligometestatic lung cancer and find out more. Hope that answers your question at least somewhat. Tom Galli also had S.B.R.T. and I'm sure there are other stage 1 members on here who have had it also and may want to add more to what I've said. Judy M. Tom Galli and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted September 21, 2017 Share Posted September 21, 2017 Linda, Welcome back! Sterotactic Body Radiation Therapy (SBRT) is very focused radiation steared by a computer program at an image target or reflective target to deliver very narrow and powerful beams to small tumors. It has emerged as an alternative to surgery. When I had my treatment in the spring of 2004, a form of SBRT called CyberKnife, had been just approved by the FDA. My treatment started with a long CT scan. The image was used to devise a software program that allowed very precise killing radiation to only the tumor. Then a thoracic surgeon inserted 5 gold fiducals (seed-sized targets) that an array of sensors used to keep the beam on target. Fiducal insertion was a surgical procedure. After surgery, a second long CT scan was administered that mapped the precise location of my tumor relative to each gold fiducal. Then they made a body mold to keep me from moving. The actual radiation was delivered for about 30 minuets a day over 3 consecutive days. Three weeks later, a scan showed the tumor fried. I was strapped to a platform in my mold and was told to remain very still while the radiation was administered by a robot like that seen in automobile paint manufacturing plants. It was fascinating to watch the thing orbit all around me, even under the platform. I’ve been NED since my CyberKnife and it is likely the reason I’m alive. Stay the course. Tom BridgetO 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted September 22, 2017 Share Posted September 22, 2017 Hi, Judy, We are glad to have you back! I'm glad to hear that you've finished treatment and that your scans showed that your tumors have shrunk. Please keep us posted on how you're doing! Thank you, Tom and Steff, for being great sources of information! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted September 23, 2017 Share Posted September 23, 2017 Yes, Linda, glad you figured out that pesky period and are now back. And thanks to all of you for the info on S.B.R.T. Bridget O Tom Galli and LaurenH 2 Quote Link to comment Share on other sites More sharing options...
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